The heroine, Amina, struggles to treat her daughter from a muscle disease: “Time passes.”

research

Amina and her husband put the disease on the map of doctors and scientists. “By raising money with the foundation, we were able to fund research in Maastricht and Nijmegen.” Thanks to the funding, efforts are now being made to find a cure for the disease through stem cell therapy. “Research that was already ready, but money was still needed for it.” In addition, research is being conducted on the progression of muscle disease and the best care using the natural path.

Amina also made sure that MDC1A experts from all over the world came together. “We have organized two conferences so that scientists can compare their research. There are not many experts in the field of rare muscle diseases, so it is important to know what each other is doing.

communication

“Nader feels lonely too,” says Amina. That's why she organizes a Colleague Infection Day every year for people with MDC1A. “It's very important that we meet each other. There's not a lot of people in the same boat, so it's nice to talk to people who are in a similar situation. It does a lot of good. Sarah really likes that too.”

What Amina would like to assure everyone is that she is not only committed to Sarah. “When we were diagnosed, we didn't know anyone else with the same muscle disease. But we're not just committed to Sarah, we're here to help everyone dealing with this muscle disease. That's why it's so great that we've been able to unite so many people; We really became a close group.”

Thanks to Amina's work, the group is one step closer to realizing their dream. “I hope this dream becomes a reality and we find a cure for this muscle disease as soon as possible.”

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